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March 3, 2018 by Robert Ostrea

My Rare Disease Week in DC 2018

Written by Robert Ostrea This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was … [Read more...] about My Rare Disease Week in DC 2018

Filed Under: Advocacy, Advocate Spotlight Tagged With: Abigail Ostrea, advocacy, Carrie Ostrea, legislative, Robert Ostrea

March 30, 2017 by carrie

Spotlight – Madi Vanstone

It’s time to let the world get to know our amazing rare advocates!  Each week I will be highlighting an advocate here in my blog as well as social media.  If you would like to be featured in the spotlight, please click here. Madi Vanstone Patient Advocate | Cystic Fibrosis About Michael: … [Read more...] about Spotlight – Madi Vanstone

Filed Under: Advocate Spotlight Tagged With: cystic fibrosis, legislative, Madi Vanstone, We Are More

March 14, 2017 by carrie

Sisterhood of the Traveling Advocates

Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease.  Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard.  But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates

Filed Under: Advocacy, Personal Tagged With: advocacy, community, legislative, Rare Disease Day

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